Time for Action
Why end of life care
needs to improve, and
what we need to do next
Introduction
In the weeks surrounding the general election a number of important
independent reports were published which together contained recommendations
about why and how people’s experience and quality of care at the end of life
needs to be improved:
•W
hat’s important to me: a Review of Choice in End of Life Care, the report of
the Choice in End of Life Care Programme Board commissioned by the last
government (‘Choice Review’)
• The House of Commons Health (Select) Committee published a report on end
of life carei
•D
ying without dignity. Investigations by the Parliamentary and Health Service
Ombudsman (PHSO) into complaints about end of life care
All these came after One Chance to Get
it Right was published in 2014 by the
Leadership Alliance for the Care of Dying
People, following the independent review
into the Liverpool Care Pathway led by
Baroness Neuberger. This identified five
priorities for the care of dying people.
Although much has been achieved since
the first national End of Life Care Strategy
was published in 2008, the scale and
rate of change need now to be stepped
up significantly if we are to ensure that
everybody receives high-quality end of life
care at the right time and in at the right
place. There are still too many stories of
people receiving inadequate care at the
end of their livesii. Staff surveys continue
to show low levels of confidence and
insufficient training in end of life care,
particularly in relation to symptom control
and communicationiii. Well-documented
inequities in access to palliative and end of
life care, whether by diagnosis, age, gender,
ethnicity, deprivation, or geography, have
persisted for too longiv (also see page 3).
Although a series of national documents
have said that care of dying people is core
business for the NHSv, the reality does not
always reflect this.
2
Collectively these reports have created
a powerful case for an accelerated step
change in the priority that is given to
caring for people at the end of life.
Whilst some of the recommendations the
reports contain will require a response from
the new government, many of them can
be implemented straightaway, and indeed
are already underway in some places. For
example, we know that the majority of
CCGs either have operational Electronic
Palliative Care Co-ordination Systems or
have work underway to achieve thatvi. Many
– perhaps the majority – of the findings and
recommendations in these reports are not
new. We know what needs to be done; the
challenge now is to do more of it, faster.
Have we heard this before?
The issues we face are not new.
• For example, inequity by diagnosis has
been a feature of palliative and end of
life care for many years. NCPC found
the following quote from the Health
Minister in 1998, in its archives. Others
might well be aware of much earlier,
similar exhortations.
“The principles of palliative care, which
are being taken for granted in voluntary
and NHS Hospices, need to become
integrated into the whole of our NHS
practice. This needs to be achieved
for all those who face life threatening
illnesses” (actual italics), Baroness
Jay of Paddington, Minister of State,
Department of Health 1998vii
• In 2003 the then Chief Executive of
the NHS, Sir Nigel Crisp, said: “Better
care of the dying should become a
touchstone for success in modernising
the NHS. This is one of the really big
issues – we must make it happen.”viii
• The House of Commons Health
(Select) Committee held an earlier
inquiry into palliative careix in 2004. Its
findings included inequity of access by
diagnosis, age, ethnicity and complexity
The purpose of this short report is
to enable decision-makers at every
level, including those responsible for
commissioning and providing services
and research, to understand the key
findings of these reports as well as their
recommendations about what is needed.
It also includes some recommendations
by the National Council for Palliative Care
(NCPC).
of need, as well as limited choice and
problems with delayed discharge and
staff training. Its recommendations
included:

“We believe that the introduction of
electronic patient records in palliative
care would be particularly beneficial
to patients, given the need for so
much support to patients out of
normal working hours, and the need
to involve a wide range of health
professionals in care at the end of life”

“We would urge the appropriate
Royal Colleges to ensure that training
in palliative care becomes part of
continuing professional development,
and to consider making such
modules a mandatory requirement for
revalidation”
 “If palliative care is to achieve
improvements in the quality of the last
months of life across the population it
will need to operate in a much more
equitable way. It will also need to be
delivered more strategically and to
find a way of overcoming the divide
between health and social care”
This report is published in anticipation of
the work of the Ambitions Partnership, a
group of national organisations across the
voluntary and statutory sectors that has
come together to develop a new five-year
vision and a fresh set of ambitions for end
of life care over the coming parliament. Its
vision will be published later in 2015 and will
provide new momentum for change.
3
Themes
The multiple recommendations in these reports are based on four key calls for change:
1. Leadership: end of life care needs to be
given much greater priority throughout the
health and care system
3. S
upporting the workforce: the care
people receive should always be
compassionate, competent and confident
2. More out-of-hospital care: we need to
develop well-coordinated communitybased care that will keep more people out
of hospital and get them discharged in
a timely fashion in accordance with their
preferences and clinical needs
4. E
liminating unfairness and inequalities:
people’s quality and access to end of
life care should not depend on their
age, diagnosis, where they live, or
anything other than their needs and their
preferences
1
Leadership: End of life care
needs to be given much
greater priority throughout
the health and care system
There is significant inconsistency in quality
of care. For example, the Care Quality
Commission reports that whilst 60% of
hospitals it has inspected provide end of
life care that is good or outstanding, 40%
are inadequate or need improvementx. This
level of variation – into which unfairness,
inconsistency, and sheer bad care can also
be read – is not acceptable in any area of
care. This is not primarily about money but
about priority, behaviour and culture change.
Reports calling for “more”, “better” or
some other different type of leadership are
familiarxi, and can too often be interpreted as
“somebody else should do something”. The
recommendations in these reports are more
specific: the purpose of leadership required
is to ensure that end of life care is seen as
a core priority throughout every relevant
organisation in the system.
The Health Committee referred to evidence
that clear leadership on end of life care
is lacking within Government and made
recommendations for named and public
accountability at every level:
4
• “The Department of Health and NHS
England should ensure that end of life
care is prioritised and embedded in future
planning at all levels. They should identify
named individuals who will be responsible
for ensuring that the new approach to end
of life care, based on the Five Priorities, is
delivered nationally.”
• “A senior named person in each NHS
Trust and care provider should be given
responsibility for monitoring how end of
life care is being delivered within their
organisation”
The PHSO’s report stressed that making end
of life care a priority is a task for everyone
working in the NHS: “How we die is part
of the core business of the NHS and a
matter of concern to all”. It recognised the
leadership of the Ambitions Partnership in
coming together to generate a new vision
and ambitions and urged “the whole of the
NHS to find the collective will to make those
ambitions a reality”.
The need for this is not confined to the NHS.
Research by NCPC and Hospice UKxii has
found that only 43% of Health and Wellbeing
Boards (which are led by Local Authorities)
made explicit reference to the end of life
care needs of their populations in their Joint
Health and Wellbeing Strategies (JHWS).
NCPC agrees with the Health Committee’s
recommendations that named individuals
should have responsibility for end of life care
in each relevant organisation and believes
that should be included explicitly in job
descriptions. It also recommends that every
organisation providing end of life care should
publish annually an account of what their
organisation is doing to improve people’s
quality and experience of care at the end of
life, as part of their annual reporting.
NHS England’s Actions for End of Life Care:
2014-16xiii will give local leaders more details
about national priorities, to inform their local
planning.
5
2
More out-of-hospital care:
We need to develop well-coordinated community-based care that
will keep more people out of hospital and get them out more quickly
(if that is their preference and appropriate for their clinical needs)
Whilst hospital will continue to be an
appropriate place for many people to be
cared for and die, for many others it is
not. Privacy, peace and dignity are often
in short supply, and surveys consistently
show that the majority of us would prefer
the familiarity of home. Enabling more
people to die outside hospital was one
of the core objectives of the 2008 End of
Life Care Strategy. Thanks to the efforts of
many organisations and people, progress
is being made and less than half of us now
die in hospital (49% in 2013xiv). However
there is still a long way to go if everybody’s
preferences and wishes are to be met. Care
outside hospital needs to be well-planned
and co-ordinated if avoidable unplanned
admissions are to be reduced.
The reports made a number of important
recommendations that would help to
improve out of hospital care. These included:
• Care planning. Everyone in need of end
of life care should have a care plan that
meets their needs and preferences. The
PHSO’s report highlighted care planning as
a weakness.
• Co-ordination. People’s plans, wishes,
and preferences for their care need be
recorded and accessed by all the services
involved in their care. This requires local
6
electronic information-sharing systems
(for example Electronic Palliative Care
Coordination Systems - EPaCCS) to be
made available across the country. These
have not yet been rolled out everywhere.
Where they have been, relevant voluntary
sector organisations, for example
hospices, have not always been included
• Care co-ordinators. The Choice Review
recommended that each person in need of
end of life care should be offered a carecoordinator to be their first point of contact
in relation to their care and preferences.
• Each local area should establish 24/7
community-based end of life care. This
should include access to essential services
including pain relief. Barriers to social
care should be removed, to enable people
to stay out of hospital or be discharged
more quickly if they are in hospital. NCPC
recommends that commissioners and
providers should stop thinking in terms
of “out of hours” services and to start
designing services that meet people’s
needs “at any time of day and night”, as
recommended by NICExv.
NCPC will publish a further report on
keeping and getting people out of hospital
later in 2015.
3
Supporting the workforce:
The care people receive
should always be competent,
compassionate and confident
The PHSO identified a number of issues in
which the health and care workforce needs
support to ensure it is always competent,
compassionate and confident. In particular
she highlighted the need to:
• Recognise when people are dying
• Make sure symptoms are properly
controlled
• Improve communication and care planning
• Bring an end to delays in diagnosis and
referral
The Choice Review recommended that staff
responsible for the delivery of end of life care
have training focused on the key elements
of their role, including needs identification,
communication, shared decision making and
advance care planning.
The Health Committee also highlighted
the preparedness of the workforce; five
of its 25 recommendations were explicitly
about workforce issues. These included
competence and training, as well as
recruitment to ensure that there are sufficient
staff in community settings.
Workforce issues need to be seen in
context: after decades of decline, numbers
of people dying each year in England are
predicted to increase from about 480,000
to about 550,000 by 2035xvi. With those
overall numbers, every percentage point
change in place of care and place of
death means about 5,000 people being
cared for and dying in a different setting to
what is currently happening. This requires
a significant shift in service design and
resources, including staffing.
7
Responsibility for addressing skills and
capacity gaps in the workforce lies at
a number of levels. Health Education
England, Local Education & Training Boards
and Skills for Care all received explicit
recommendations about workforce planning
and training curricula, in each of the three
reports.
There are also important issues for
providers. The PHSO found that “some
clinicians need to be more confident with
established good practice, such as the
skilled use of morphine and other opiates”.
This again is not a new issue. Dying in pain
is a significant public fearxvii. There is no
good reason why clinicians should not be
more confident in the use of morphine and
titration, as well as symptom control more
generally. There has been too little recent
progress. For example, the annual VOICES
surveys of bereaved people show no
significant change in the numbers of people
who died at home who were reported always
to have had access to pain relief, over the
four years between 2011 and 2014xviii. Clear,
honest and effective communication is also
an essential skill. Ensuring end of life skills
are up to date and releasing staff for training
need to be a priority for management,
governance, and regulation.
NCPC will publish a more detailed report on
workforce issues in 2016.
4
Eliminating unfairness and inequalities:
We need to get end of life care right for everyone,
regardless of the circumstances of their lives,
where they live or what their diagnosis is
Dying does not make equals of us all. End
of life care is still riddled with inequity and
inequalities. Age, gender, deprivation,
marital status and geography also have an
impact on people’s access to and quality
of care, as well as diagnosis. This has been
evidenced in many reports over the yearsxix,
including NCPC’s annual Minimum Data
Set for Specialist Palliative Care (MDS).
For instance, whilst the MDS has revealed
some improvement in access to specialist
palliative care by people with conditions
other than cancer, it is still overwhelmingly
dominated by people who have cancer.
Depending on service setting 64-85% of
people seen in specialist palliative care have
cancerxx, although cancer accounts for only
about 29% of deathsxxi.
To tackle this commissioners and providers
need to take a “whole community”
approach to service planning. The
Health Committee recommended that
commissioners should explicitly set out how
they will provide specialist palliative care
services for people from all backgrounds
and with all diagnoses. The Choice Review
Board found that: “A ‘national choice offer’,
made to everyone regardless of where they
live, their individual circumstances or their
clinical condition, should be the mechanism
for ensuring that good end of life care
happens everywhere.”
This will require close attention to be paid
when drafting commissioning and service
specifications, to ensure that services work
as well for people with conditions other than
cancer as they do for people with cancer.
People’s quality and access to care should
not depend on their age, diagnosis, where
they live, or anything other than their needs
and their preferences. Commissioners
and providers should not be content with
replicating existing services but should be
proactively seeking to innovate and develop
models that will enable everyone to access
end of life care when they need it. Again
this is happening in some places, but not
everywhere.
There is also a need to prioritise evidence
and intelligence more seriously than has
been done to date. This means more robust
and comprehensive data collection at
individual level, and greater investment in
research at the end of life. Currently just 10p
in every £100 spent on health research is
spent on end of life carexxii.
8
The government’s
agenda for end of life care
The new government prioritised end of life
care in its manifesto, explicitly setting this in
the context of whole-system integration:
“Too many people spend their last days in
hospital when they would prefer to die closer
to home; we will support commissioners
to combine better health and social care
services for the terminally ill so that more
people are able to die in a place of their
choice. We will continue to integrate the
health and social care systems, joiningup services between homes, clinics and
hospitals, including through piloting new
approaches like the pooling of around £6
billion of health and social care funding
in Greater Manchester and the £5.3 billion
Better Care Fund”.
This evidence of commitment is very
welcome, although the detail needs now
to be fleshed out. Pooled budgets and
integrated services could bring significant
improvements to end of life care. However, if
this is to be achieved, end of life care needs
to be written explicitly into the frameworks
that govern integration work. This is not
currently happening. For example, the
Memorandum of Understanding for the
Greater Manchester Health and Social Care
Devolutionxxiii stops short of end of life care,
referring instead to improving health and
wellbeing “from early age to the elderly”.
The Five Year Forward View, published by
NHS England in 2014, did not include any
substantive ambitions for end of life care.
Integration also needs to be seen as
including the voluntary sector as an equal
partner, not something solely or principally
for the statutory sector. This is particularly
true in end of life care, where the voluntary
sector provides the majority of specialist
palliative carexxiv. There is anecdotal
evidence that many hospices have not been
involved in local Better Care Fund plans
and internal analysis by NCPC of Better
9
Care Fund plans indicates that only a small
minority explicitly mentioned end of life care.
The Choice Review Board found that despite
the cradle to grave ambitions of the NHS,
there had been “decades of neglect of end
of life care” and recommended that an
additional £130 million be identified in the
2015 Comprehensive Spending Review
and invested in social care and NHS
services to deliver a national choice offer.
The government needs to address that
recommendation explicitly, as well as all the
recommendations in these three reports,
when setting out its plans to improve end of
life care over the next five years.
End of life care should be seen as a litmus
test for all government and system-led
initiatives to improve health and care. A
seven-day NHS must ensure that people
at the end of life receive the care they need
round the clock, regardless of their setting.
Similarly the Secretary of State for Health
has spoken of his desire to make the NHS
the safest service in the world. The PHSO’s
report made it clear that too many people
are not safe at the end of life, when they
are at their most vulnerable. Initiatives to
improve safety must be seen to work for the
benefit of people at the end of life.
It is also essential to recognise that dying,
death, and bereavement are not purely
health and social care issues, but affect the
whole of people’s lives. This means that we
need a much wider and richer public debate
about how we support each other at times
of crisis and loss. NCPC’s pathfinder project
for the Dying Well Community Charterxxv
(supported by Public Health England) is
a contribution to this, as is the work of
the Dying Matters coalition, led by NCPC
(supported by NHS Improving Quality).
It also means that we need to review the
whole-life impact of dying, death, and
bereavement.
Areas which need detailed focus include:
the extent to which the benefits system
supports people who are going through
dying, death and bereavement (their
own or that of somebody close to them);
compassionate employment policies,
including bereavement leave and support;
coroner rules surrounding home deaths;
personal, social, health and economic
education in schools; wills and intestacy,
particularly as family structures and
relationships become more complex and
fluid.
The Dying Matters coalition and its
members have already campaigned to raise
awareness on some of these issues, but
further Government action is now required.
Just as the Prime Minister’s Dementia
Challenge has raised the profile of dementia,
so the Government needs now, as part of
its leadership on end of life care, to consider
the way that government and statutory
organisations deal with and support people
through dying, death and bereavement.
NCPC asks the government to consider the
example of the Irish Taoiseach, and appoint
an independent person to reviewxxvi the way
in which all government departments and
branches of the state deal with end of life
issues, and in particular those outside health
and social care.
What next?
2015 must be a momentous year for end
of life care in England. The findings of three
significant independent reports, taken
together with the forthcoming publication
of New Ambitions by the Ambitions
Partnership, and a new government
committed to improving end of life care,
present an extraordinary opportunity
for a step-change. All policy-makers,
commissioners, providers, local leaders and
health and care staff, as well as society at
large, have a part to play. The time for action
is now.
10
Acknowledgements
This report was written by Simon Chapman, Director of Policy, Intelligence & Public Affairs at
NCPC, with comments and support from Claire Henry (Chief Executive), Jocelyn Hinds (Data &
Intelligence Manager) and Andrew Grey (Policy and Public Affairs Officer), all at NCPC.
HC 805 2015
Well-publicised stories of poor care include, most recently, those documented in the PHSO report.
iii
Examples include: Royal College of Nursing survey 2014 www.rcn.org.uk/newsevents/news/article/uk/dying_in_the_uk_nurses_
raise_profound_concerns; Improving end-of-life care: professional development for physicians (2012) Royal College of Physicians
iv
Examples of reports on inequalities include those published by the National End of Life Care Intelligence Network (most recently
What we know now 2014); NCPC’s annual Minimum Data Set for Specialist Palliative Care (MDS); Equity in the Provision of Palliative
Care in the UK: Review of Evidence (2015) Personal Social Services Research Unit, London School of Economics and Political
Science
v
Examples include: The End of Life Care Strategy (2008); A mandate from the Government to the NHS Commissioning Board: April
2013 to March 2015 (page 6); One chance to get it right (2014) Leadership Alliance for the Care of Dying People (page 75)
vi
Electronic Palliative Care Co-ordination Systems (EPaCCS) in England: Survey of clinical commissioning groups (2013) by the
National End of Life Care Intelligence Network (2014) Public Health England & NHS Improving Quality
vii
Writing in the foreword to “Reaching out: specialist palliative care for adults with non-malignant diseases” (1998) The National
Council for Hospice & Specialist Palliative Care services (now NCPC) and the Scottish Partnership Agency for Palliative and Cancer
Care
viii
2020 Vision (NCPC) 2005
ix
HC 454-1 (2004)
x
Presentation by Sir Mike Richards, Chief Inspector of Hospital, November 2014
xi
For example “End-of-life-care” King’s Fund (2010)
xii
Most recently: Mapping England’s Health and Wellbeing Boards’ vision for dying people (2014)
xiii
Actions for End of Life Care: 2014-16 NHS England (2014)
xiv
ONS (2013) Deaths in England and Wales
xv
NICE Quality Standard, End of Life care (2011)
xvi
What’s important to me
xvii
Polling for Dying Matters by ComRes in 2011 found that 83% of respondents reported as being very or fairly scared of dying in
pain.
xviii
ONS National Survey of Bereaved People (VOICES) 2014
xix
See iv above and Box 1
xx
National Survey of Patient Activity Data for Specialist Palliative Care Services. MDS full national report 2013-14 (2015)
xxi
ONS Deaths registered in England & Wales (2013)
xxii
“The crisis facing terminally ill people and their families” NCPC and others (2014)
xxiii
www.agma.gov.uk/cms_media/files/mou.pdf
xiv
For example approximately 60% of people seen by specialist palliative care community services that respond to NCPC’s national
Minimum Data Set collection are seen by independently-managed organisations
xxv
www.ncpc.org.uk/communitycharter
xxvi
www.ehospice.com/ArticleView/tabid/10686/ArticleId/15324/language/en-GB/Default.aspx
i
ii
About NCPC
The National Council for Palliative Care
(NCPC) is the umbrella charity for all those
involved in palliative, end of life and hospice
care in England, Wales and Northern Ireland.
We believe that everyone approaching the
end of life has the right to the highest quality
care and support, wherever they live, and
whatever their condition. We work with
government, health and social care staff and
11
people with personal experience to improve
end of life care for all.
NCPC leads the Dying Matters coalition
which aims to help people talk more openly
about dying, death and bereavement, and to
make plans for the end of life.
NCPC is a registered charity number
1005671 and a company limited by
guarantee number 2644430.
The National Council for Palliative Care
Email: [email protected]
Website: www.ncpc.org.uk
Time for Action
£2.50
Registered Charity no. 1005671
A company limited by guarantee no.
2644430
ISBN 978-1-910286-05-0
© Copyright the National Council for Palliative Care 2015.
Published July 2015 by the National Council for Palliative Care.